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Case studies in nursing

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Case studies in nursing

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Case Studies in Palliative and End-of-Life Care

Margaret L. Campbell

Cam

pbell

9 780470 958254

Case Studies in Palliative and End-of-Life Care uses a case-based approach to provide students and practitioners with an important learning tool to improve critical thinking skills and encourage discussion toward improving experiences for patients and their families.

the book is organized into three sections covering subjects related to communication, symptom management, and family care. each case is presented in a consistent, logical format for ease of use, highlighting key evidence-based concepts, including the case history, care setting, diagnosis and prognosis, assessment, treatment considerations, and family support.

a key reference, Case Studies in Palliative and End-of-Life Care is an invaluable resource for clinicians who provide palliative care to patients with life-limiting illnesses and those at the end of life along with their families.

KEy FEATuREs

includes more than 35 cases covering a range of palliative and end-of-life care subjects

emphasizes care of the family as well as the patient

easy to follow, structured format for each case

Written by experts in the field

AbOuT ThE EDITOR

Margaret L. Campbell, Phd, rn, FPCn, is associate Professor of research in the Office for Health research at the College of nursing at Wayne state university in detroit, Michigan.

RELATED TITLEsPalliative and End of Life Care for Children and Young People: Home, Hospice, Hospitalanne grinyer9780470656143Clinical Case Studies in Home Health Care Leslie neal-Boylan9780813811864


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Edited by

Margaret L. Campbell, PhD, RN, FPCN Associate Professor — Research Office of Health Research College of Nursing Wayne State University Detroit, MI

A John Wiley & Sons, Inc., Publication

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This edition first published 2012 © 2012 by John Wiley & Sons, Inc.

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Library of Congress Cataloging-in-Publication Data Case studies in palliative and end-of-life care / edited by Margaret L. Campbell. p. ; cm. Includes bibliographical references and index. ISBN 978-0-470-95825-4 (pbk. : alk. paper)I. Campbell, Margaret L., 1954– [DNLM: 1. Nursing Care–methods–Case Reports. 2. Palliative Care–methods–Case Reports. 3. Terminal Care–methods–Case Reports. WY 152.3] 616.02′9–dc23

2012011915 A catalogue record for this book is available from the British Library.

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The publisher and the author make no representations or warranties with respect to the accuracy or completeness of the contents of this work and specifically disclaim all warranties, including without limitation warranties of fitness for a particular purpose. No warranty may be created or extended by sales or promotional materials. The advice and strategies contained herein may not be suitable for every situation. This work is sold with the understanding that the publisher is not engaged in rendering legal, accounting, or other professional services. If professional assistance is required, the services of a competent professional person should be sought. Neither the publisher nor the author shall be liable for damages arising herefrom. The fact that an organization or Website is referred to in this work as a citation and/or a potential source of further information does not mean that the author or the publisher endorses the information the organization or Website may provide or recommendations it may make. Further, readers should be aware that Internet Websites listed in this work may have changed or disappeared between when this work was written and when it is read.

1 2012

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v

Contributor List viii

Introduction xii Margaret L. Campbell

Section 1 Communication Case Studies 1

Case 1.1 Communicating about a Progressive Diagnosis and Prognosis 5 Julia A. Walch

Case 1.2 Diagnosis/Prognosis Uncomplicated Death at Home 12 Constance Dahlin

Case 1.3 Accommodating Religiosity and Spirituality in Medical Decision-Making 18 Jennifer Gentry

Case 1.4 Discussing Cardiopulmonary Resuscitation When it May Be Useful 26 Kelli Gershon

Case 1.5 Discussing CPR When it is a Non-Beneficial Intervention 33 Judy Passaglia

Case 1.6 Discussing Brain Death, Organ Donation, and Donation after Cardiac Death 41 Christine Westphal and Rebecca Williams

Case 1.7 Discussing Physiological Futility 52 Judy C. Wheeler

Table of Contents

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vi Table of Contents

Case 1.8 Wounded Families: Decision-Making in the Setting of Stressed Coping and Maladaptive Behaviors in Health Crises 60 Kerstin McSteen

Case 1.9 Notification of an Expected Death 68 Peg Nelson

Case 1.10 Death Notification after Unexpected Death 73 Garrett K. Chan

Section 2 Symptom Management Case Studies 83

Case 2.1 Pain: Cancer in the Home 87 Constance Dahlin

Case 2.2 Treating an Acute, Severe, Cancer Pain Exacerbation 98 Patrick J. Coyne

Case 2.3 Pain and Advanced Heart Failure 104 Margaret L. Campbell

Case 2.4 Dyspnea and Advanced COPD 110 Margaret L. Campbell

Case 2.5 Dyspnea and Heart Failure 117 Garrett K. Chan

Case 2.6 Treating Dyspnea during Ventilator Withdrawal 128 Margaret L. Campbell

Case 2.7 Cough Associated with COPD and Lung Cancer 138 Peg Nelson

Case 2.8 Hiccups and Advanced Illness 145 Marian Grant

Case 2.9 Treating Nausea Associated with Advanced Cancer 152 Judy C. Wheeler

Case 2.10 Nausea Associated with Bowel Obstruction 161 Terri L. Maxwell

Case 2.11 Nausea Related to Uremia, Dialysis Cessation 168 Linda M. Gorman

Case 2.12 Opioid-Induced Pruritus 176 Richelle Nugent Hooper

Case 2.13 Pruritus in End-Stage Renal Disease 183 Linda M. Gorman

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Table of Contents vii

Case 2.14 Opioid-Induced Constipation 190 Grace Cullen Oligario

Case 2.15 Depression in Advanced Disease 198 Todd Hultman

Case 2.16 Treating Anxiety 205 Darrell Owens

Case 2.17 Terminal Secretions 213 Terri L. Maxwell

Case 2.18 Fungating Wounds and the Palliative Care Patient 220 Laura C. Harmon

Case 2.19 Pressure Ulcer Care in Palliative Care 229 Laura C. Harmon

Case 2.20 Treating Ascites 239 Darrell Owens

Case 2.21 Delirium Management in Palliative Care 247 Kerstin McSteen

Section 3 Family Care Case Studies 257

Case 3.1 Caring for the Family Expecting a Loss 259 Patricia A. Murphy and David M. Price

Case 3.2 Anticipatory Grief and the Dysfunctional Family 266 Rita J. DiBiase

Case 3.3 Acute and Uncomplicated Grief after an Expected Death 277 Rita J. DiBiase

Case 3.4 Bereavement after Unexpected Death 289 Garrett K. Chan

Case 3.5 Complicated Grief 300 Rita J. DiBiase

Index 309

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viii

EDITOR

Margaret L. Campbell, PhD, RN, FPCN Associate Professor—Research Office of Health Research College of Nursing Wayne State University Detroit, Michigan

CONTRIBUTORS

Garrett K. Chan, PhD, APRN, FPCN, FAEN, FAAN Lead Advanced Practice Professional and Associate Clinical Director Emergency Department Clinical Decision Unit Stanford Hospital and Clinics Stanford, California Associate Adjunct Professor School of Nursing University of California, San Francisco San Francisco, California

Patrick J. Coyne, MSN, ACHPN, ACNS-BC, FAAN, FPCN Clinical Director of Thomas Palliative Program Virginia Commonwealth University/Massey Center Richmond, Virginia

Contributor List

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Contributor List ix

Constance Dahlin, APRN, BC, ACHPN, FAAN Palliative Care Service, North Shore Medical Center and Massachusetts General Hospital Associate Clinical Professor, Massachusetts General Hospital Institute of Health Professions Faculty, Harvard Medical School Center for Palliative Care Boston, Massachusetts

Rita J. DiBiase, MSN, RN(EC), ACNP-BC, ACNS-BC, AOCNS, CHPCN(C) Palliative Care Nurse Practitioner Windsor Regional Cancer Program, Windsor Regional Hospital Windsor, Ontario Canada

Jennifer Gentry, RN, ANP-BC, ACHPN, FPCN Nurse Practitioner Duke University Hospital Palliative Care Service Durham, North Carolina

Kelli Gershon, FNP-BC, ACHPN Nurse Practitioner Symptom Management Consultant The Woodlands, Texas

Linda M. Gorman, RN, MN, PMHCNS-BC, CHPN, FPCN Palliative Care Clinical Nurse Specialist/Palliative Care Consultant Los Angeles, California

Marian Grant, DNP, RN, CRNP, ACHPN Assistant Professor, Family and Community Health University of Maryland School of Nursing Baltimore, Maryland

Laura C. Harmon, ACNP, BC, CWOCN, CCRN Nurse Practitioner Internal Medicine and Wound Care Detroit Receiving Hospital Detroit, Michigan

Richelle Nugent Hooper, MSN, FNP, ACHPN Director Palliative Care Clinical Operations Four Seasons Flat Rock, North Carolina

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x Contributor List

Todd Hultman, PhD, ACNP, ACHPN Nurse Practitioner and Co-director, Inpatient Palliative Care Consultation Service Massachusetts General Hospital Faculty, Harvard Medical School Center for Palliative Care Boston, Massachusetts

Terri L. Maxwell, PhD, APRN Vice President, Strategic Initiatives Weatherbee Resources Inc. and the Hospice Education Network Inc. Hyannis, Massachusetts

Kerstin McSteen, MS, ACNS-BC, ACHPN Palliative Care Consultant Abbott Northwestern Hospital Minneapolis, Minnesota

Patrica A. Murphy, PhD, FAAN, FPCN APN Ethics/Bereavement University Medical and Dental of New Jersey-University Hospital Newark, New Jersey

Peg Nelson, MSN, NP, ACHPN Director, Mercy Supportive Care Palliative and Pain Services St. Joseph Mercy Oakland Pontiac, Michigan Adjunct Faculty Palliative Nurse Practitioner Track Madonna University Livonia, Michigan

Grace Cullen Oligario, MSN, FNP-C, ACHPN Nurse Practitioner, Oncology and Palliative Care John D. Dingell VA Medical Center Detroit, Michigan

Darrell Owens, DNP, ARNP Attending Provider and Director Outpatient Palliative Care Services Harborview Medical Center Clinical Assistant Professor of Medicine and Nursing University of Washington Seattle, Washington

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Contributor List xi

Judy Passaglia, APRN, ACHPN Stanford Hospital and Clinics Palliative Care and Supportive Oncology Program Manager and APN Palo Alto, California

David M. Price, M.Div, PhD New Jersey Medical School Ethics Faculty, retired Newark, NJ

Julia A. Walch, RN, MSN, FNP-BC Palliative Care Detroit Receiving Hospital Detroit, Michigan

Christine Westphal, MSN, NP, ACNS-BC, ACHPN Director/Nurse Practitioner Palliative and Restorative Integrated Services Model (PRISM) Oakwood Healthcare System Dearborn, Michigan

Judy C. Wheeler, MSN, MA, GNP-BC Palliative Care Nurse Practitioner Detroit Receiving Hospital Detroit, Michigan

Rebecca Williams, BS, MA, HHCC Hospital Services Associate Gift of Life Michigan Ann Arbor, Michigan

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xii

Introduction Margaret L. Campbell

Case Studies In Palliative and End-of-Life Care is written for clinicians caring for patients and their families across diagnoses, illness trajectories, settings for care, and models of care delivery. All of the contributing authors are advanced practice nurses who bring their hands-on experience and join it with the evidence base for their respective chapters; hence, each chapter reflects the art and science of palliative care.

The conceptual framework for Case Studies In Palliative and End of Life Care is the Clinical Practice Guidelines for Quality Palliative Care produced by the National Consensus Project (NCP). For this book we embrace the definition of palliative care from the NCP as follows: “The goal of palliative care is to prevent and relieve suffering and to support the best possible quality of life for patients and their families, regardless of the stage of the disease or the need for other therapies. Palliative care is both a philosophy of care and an organized, highly structured system for delivering care. Palliative care expands traditional disease-model medical treatments to include the goals of enhancing quality of life for patient and family, optimizing function, helping with decision-making, and providing opportunities for personal growth. As such, it can be delivered concurrently with life-prolonging care or as the main focus of care.” 1

Each chapter begins with a case history followed by identification of a single clinical question raised by the case. A comprehensive, evidence-based discussion of the clinical problem follows and the chapter concludes by returning to the case for the outcomes of the treatment plan. Each case ends with “Take Away Points”—succinct summaries of the chapter.

Case studies rely on “story” to engage the learner and are an effective method for clinical teaching because they mimic the clinical encounter.

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Introduction xiii

Stories are increasingly recognized as central to learning, facilitating a shared framework for understanding and enabling individuals to learn from one another. Stories also serve a purpose because people tell stories to make diverse information coherent, to give meaning and convey understanding, and to situate concepts in practice. 2

Case Studies In Palliative and End-of-Life Care is comprised of three sections: Communication, Symptom Management, and Family Care, with a number of case studies in each section. The cases represent a cross-section of diagnoses including cancer, heart failure, chronic obstructive pulmonary disease (COPD), chronic kidney disease, and dementia. Illness trajectories discussed in the cases range from newly diagnosed to the moment of death. Settings of care are home or hospital. The cases may represent actual patients cared for by the author or may be a composite of similar cases. In no case can the identity of an actual patient or family be identified.

It is my hope that this collection of case studies will be employed for self-learning and for classroom teaching.

REFERENCES

[1] National Consensus Project for Quality Palliative Care . Clinical Practice Guidelines for Quality Palliative Care . 2nd edition. Pittsburgh, PA : National Consensus Project for Quality Palliative Care ; 2009 .

[2] Snowden L. Story-telling: an old skill in a new context . Business Information Review. 1999 ; 16 ( 1 ): 30 – 37 .

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Case 1.1 Communicating about a Progressive Diagnosis and Prognosis 5 Julia A. Walch

Case 1.2 Diagnosis/Prognosis Uncomplicated Death at Home 12 Constance Dahlin

Case 1.3 Accommodating Religiosity and Spirituality in Medical Decision-Making 18 Jennifer Gentry

Case 1.4 Discussing Cardiopulmonary Resuscitation When it May Be Useful 26 Kelli Gershon

Case 1.5 Discussing CPR When it is a Non-Beneficial Intervention 33 Judy Passaglia

Case 1.6 Discussing Brain Death, Organ Donation, and Donation after Cardiac Death 41 Christine Westphal and Rebecca Williams

Case 1.7 Discussing Physiological Futility 52 Judy C. Wheeler

Case 1.8 Wounded Families: Decision-Making in the Setting of Stressed Coping and Maladaptive Behaviors in Health Crises 60 Kerstin McSteen

Case 1.9 Notification of an Expected Death 68 Peg Nelson

Case 1.10 Death Notification after Unexpected Death 73 Garrett K. Chan

Section 1Communication Case Studies

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2 Section 1 Communication Case Studies

Overview

The effective communication of information to patients and their families is both evidence-based and artful. In the dominant U.S. culture, patients want to be told their diagnosis and prognosis. Because our society is multi-cultural, and not all members share the wish to know bad news, asking the patient about their preferences regarding information is the easiest way to avoid error and respect the patient ’ s wishes. Breaking bad news to patients or their surrogates is one of the most difficult tasks clinicians face.

An early study identified two categories of spouse needs when the patient is dying in the hospital: relationship with the patient, and family needs for communication and support. 1 Successful communica-tion is characterized by collaboration with the other members of the health care team, listening as much as speaking, and acknowledging patient or family emotions. In an early study of the needs of critically ill patients ’ families, five of the ten most important needs were for communication: 2

• To be called at home about changes in the condition of the patient • To know the prognosis • To have questions answered honestly • To receive information about the patient once a day • To have explanations given in terms that are understandable

It is likely that the aforementioned needs of families of critically ill patients represent the needs of families in other settings, including the home or extended care facilities. In a study of the needs of spouses of patients dying in the hospital, these additional communication needs were identified: 1

• Assurance of the comfort of the patient • Information about the patient ’ s condition • Informed about the impending death

Ineffective communication about dying is frequently cited as a barrier to optimal care at the end of life. 3 In this first section about com-munication the cases are organized hierarchically from the types of communication that occur early in a diagnosis to those that occur at the time of death. The section opens in Case 1.1 with a case description about presenting a diagnosis and prognosis in a life-limiting illness (dementia). The skills presented can be applied across any condition. Each subsequent case has features that increase the communication complexity. In Case 1.2 the diagnosis and prognosis are presented in the context of the patient ’ s imminent death. In Case 1.3 the clinician responds to family religiosity while attempting to provide information about a prognosis of imminent death.


Section 1 Communication Case Studies 3

The next cases (1.4 and 1.5) focus on routine discussions about resuscitation status and patient preferences. The euphemistic language that persists in clinician ’ s discussions about cardiopulmonary resusci-tation (CPR) and “do not resuscitate” (DNR) with each other, patients, and surrogates confuses medical decision-making; thus, the terms “code status” “coding,” and “coded” have not been used. In the case in Case 1.4 CPR may be a useful intervention, whereas in the case in Case 1.5 CPR is not useful. The authors illustrate important concepts about discussing potentially beneficial and non-beneficial CPR.

Cases 1.6 through 1.8 present special communication circumstances. In Case 1.6 the complexities of discussing brain death and making organ donation decisions are illustrated. Communicating about physiological futility is addressed in Case 1.7 along with ethical consid-erations. The challenges of communicating with a maladaptive family are explained in Case 1.8.

This book section ends with two cases that describe how to inform the family that patient death has occurred. In Case 1.9 the family is expecting the death but in Case 1.10 the death is unexpected.

TAKE AWAY POINTS

• Communicating about the end of life requires unique skills. • Effective clinician communication is timely, honest, comprehensive,

and comprehensible. • Effective clinician communication entails listening as much as

talking and acknowledging patient and family emotions.

REFERENCES

[1] Hampe SO . Needs of the grieving spouse in a hospital setting . Nursing Research. 1975 ; 24 : 113 – 120 .

[2] Molter NC . Needs of relatives of critically ill patients: a descriptive study . Heart & Lung. 1979 ; 8 : 332 – 339 .

[3] Field MJ , Cassel CK , eds. Approaching death: Improving care at the end of life . Washington, DC : National Academy Press ; 1997 .


Case Studies in Palliative and End-of-Life Care, First Edition. Edited by Margaret L. Campbell.© 2012 John Wiley & Sons, Inc. Published 2012 by John Wiley & Sons, Inc.

5

HISTORY

Thomas was an 88-year-old African-American man who was admitted to the hospital for the third time in a month via the Emergency Department with fever and difficulty breathing; the admission diagnosis was urinary tract infection. He was discharged from the hospital just two days prior to the most recent admission after a prolonged hospitalization for health-care-acquired pneumonia which required intensive care and a short course of mechanical ventilation. He made slow but steady clinical improvements with the exception of his appetite, which remained poor. A percutaneous endoscopic gastrostomy (PEG) tube was being considered by the attending physician. Prior to recent admissions the patient had not been hospitalized in several years.

His past medical history included coronary artery disease status post coronary artery bypass graft surgery, atrial fibrillation, hyperten-sion, Alzheimer ’ s dementia (AD), and chronic kidney disease. He resided in a nursing home because his wife could no longer care for him at home. A palliative care consult was placed to discuss diagnosis, prognosis, and treatment goals with the patient ’ s wife.

Thomas ’ s wife reported that Thomas had been steadily declining over the past six to eight months, he was incontinent of bowel and bladder, and he was able to ambulate short distances and interact with her and other family members.

Case 1.1 Communicating about a Progressive Diagnosis and Prognosis

Julia A. Walch

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A geriatric assessment disclosed: needs assistance with activities of daily living (ADLs); dependent for instrumental activities of daily living (IADLs); able to remember three objects after five minutes; clock test abnormal; could not finish the Montreal Cognitive Assessment; able to draw a cube, name animals, recall four out of five words; and oriented to person and place but not time. Thus, he was categorized as being moderately impaired secondary to AD.

Further medical issues identified included malnutrition with hypo-albuminemia, depression with a geriatric depression scale score of 9/15, and debility. A speech language pathology evaluation revealed dysphagia related to pneumonia that may improve once pneumonia improves.

PHYSICAL EXAMINATION

Temperature: 36.9°C, heart rate: 70s, blood pressure: 110 to 150/60 to 70s General: Elderly, cachectic male, sitting up in bed, appeared comfortable Central nervous system: Alert, oriented to person and place, able to

follow simple commands, recognized wife Head, eyes, ears, nose, throat: Arcus senilis Respiratory: Minimal bilateral basilar crackles, no accessory muscle

use, on 2 liters nasal cannula Cardiovascular: Irregularly irregular, no murmurs Gastrointestinal: Soft, nontender, nondistended Genitourinary: Voiding well 120 to 250 cc/hour via urinary catheter Extremities/skin: No pressure ulcers or deformities

DIAGNOSTICS

No diagnostic studies were conducted during this visit.

CLINICAL QUESTION

How should diagnosis and prognosis be discussed with the surrogate decision maker?

DISCUSSION

Most of what is known about communication of breaking bad news has focused on physician-patient communication in the oncology


Case 1.1 Communicating about a Progressive Diagnosis and Prognosis 7

population at the end of life. Bad news is defined as any information which adversely and seriously affects an individual ’ s view of his or her future and is always in the eye of the beholder. 1 Effective communica-tion is the key to developing a relationship with the patient or family. This level of communication requires mutual respect and strong listening skills that allow for gathering and eliciting information and the implementation of a treatment plan. Doing this well can have a profound effect on how the patient or family approach their disease and its treatment. Effective communication can be achieved in the first meeting. In a first-person account a woman who had been a hospital patient explained how she changed hospitals and doctors three times during the course of her illness not because she was unhappy with the care, but because she was unhappy with the communication. 2

Although physicians typically discuss diagnosis and prognosis, nurses are the constant, consistent health care providers, especially in the hospital or nursing home setting. Nurses are often the clinician who the patient or family asks to clarify questions or concerns after the multidisciplinary meeting is completed. Experienced nurses are more comfortable discussing prognosis compared to nurse with less experience. 3

The communication strategy SPIKES (Setting, Perception, Invitation, Knowledge, Emotions and Empathic responses, and Strategies and Summary) is a mnemonic device developed to educate physicians on how to deliver bad news. 4 Communicating bad news or counseling a patient/family about a chronic, progressive, eventually terminal disease is an essential skill for nurses as well. The nurse can apply the SPIKES mnemonic device to discuss diagnosis and prognosis with patients or families.

Setting up the Interview

Before starting a family meeting, confirm the medical facts of the case and plan what will be discussed. Ascertain if the patient will be able to participate. The patient’s preferences about which family members to include should be elicited. If uncomfortable with communicating the information, rehearse either mentally or to a colleague what you will say. Create the setting for the meeting, which should allow for privacy. A conference room is the ideal setting but if it is at the patient ’ s bedside draw the curtains around the bed. Some families still prefer to meet at the patient ’ s bedside even when the patient is unable to participate. Ensure there are enough chairs for everyone and that everyone is sitting down. This aids in relaxing the patient, gives the message that the focus is on the patient, gives an impression that time is not rushed, and prevents the psychological barrier of distance such as when one is seated and another is standing. Plan adequate time for discussion and alert nursing staff about the meeting to prevent interruptions.



Perception

Perception is assessing what the patient or family already understands about the patient ’ s health. The meeting should start with asking the patient or family to describe the medical condition. The statement “Tell me what you understand about your condition” is an effective opening. A common misunderstanding among health care providers when caring for a patient with a chronic progressive medical condition is that the patient or family may be in denial. However, the real issue is that they do not understand the disease process. This is also the time for the nurse to assess the patient ’ s or family ’ s ability to understand and their readiness to accept information.

Invitation

Invitation involves finding out how much the patient or family wants to know. Ask, “Are you ready to talk about our impressions?” or “Is this a good time to talk?” This is also when the nurse establishes how much information the patient wants or whether the patient prefers his or her condition be discussed with someone else. Most people want to know the truth; more than 90% of people want to know the truth about their diagnosis even if it is grave. 4 Assessing the level of under-standing the patient or family has about the disease helps the clinician to determine how much information/detail they need.

Knowledge

Sharing the information needs to be done in a straightforward, honest, yet sensitive manner. The information conveyed needs to be based on facts and evidence, not on personal opinion. Some families will ask, “What would you do?” A helpful response may be “It is important to base decisions on what your loved one would want.” Information that is conveyed correctly to the patient or family allows them to cope with the situation and plan for the future. Avoid the use of medical t erminology or technical jargon. There are times when a “warning shot” is needed to prepare the family that bad news is coming; for instance, the clinician might say “We have your results and I have bad news.”

Emotions with Empathetic Responses

The clinician can display empathy while delivering bad news by saying “I am sorry to have to tell you this.” It is best not to just say “I ’ m sorry” because this can be misinterpreted for pity or being responsible for the situation.

Patients and families respond to the news in a variety of ways such as through tears, sadness, love, anxiety, or other emotions. Some expe-rience denial, blame, guilt, or disbelief. Some people walk out of a meeting or respond nonverbally. Patients who might not be able to



walk away but do not want to participate any longer may turn away, close their eyes, or just stop speaking. In this case clarify with the patient that they want to stop meeting and ask permission to return at another time or day. It is important to acknowledge emotions by asking for a description about what is being displayed. “You appear to be....Can you tell me how you are feeling?” or “Tell me more about what you are feeling.” Once the patient or family has worked through their emotions they are often able to make decisions in the best interests of themselves or their loved one. Patients or families who have good information and sufficient time are able to cope with the news and participate in decision making.

Strategy and Summary

The final step is planning and follow-up. This may include gathering further information from tests or procedures, setting up another family meeting, or making referrals to an outside agency such as hospice. This is also when the clinician explains treatment plans, addresses any concerns, and plans for follow-up. At the end of the meeting the patient and family should feel their concerns were addressed and not feel abandoned. A follow-up meeting should be made and contact information provided. Throughout the meeting, frequently allow the patient or family to ask questions, and assess whether they want to continue. Some people need to have the information repeated several times, whereas others need only to hear it once.

BACK TO OUR CASE

The primary goal for the meeting was to educate Thomas ’ s wife about AD and its natural history and to counsel her that it is a progressive terminal illness. Other goals of the meeting included discussing resuscita-tion status, goals of care including hospice, and late stage care including recommendation for oral/hand feeding only in the end stage (no PEG). In this case the patient was not yet eligible for hospice; however, part of the education about a progressive illness is future planning.

Preparation for this meeting included a review of the medical record, examination of Thomas, and discussion with other health care providers. Thomas ’ s wife was already in the his room and a meeting had not been formally set up, so the clinician introduced herself and the reason for the consultation by saying “I would like to speak with you about your husband ’ s Alzheimer ’ s. Is this a good time to meet?” The meeting was at the patient ’ s bedside. Thomas ’ wife was asked her understanding of the patient ’ s dementia. She had a basic understanding of the disease and gave a history of decline over the last six to eight



months and recent nursing home placement. There was discussion about the natural course of AD, including late stage progression and feeding issues.

The following strategy was used to explain this to Thomas ’ wife: Alzheimer ’ s is a disease of the brain that follows a pattern of decline, in which the brain stops sending out voluntary and involuntary signals. A patient with Alzheimer ’ s does not stop walking because there is some-thing wrong with their legs, the brain stops telling the person to get up and walk. They become incontinent not because there is an issue with the bladder or bowel but because the brain is no longer sending a signal that the bladder or bowel is full. Thomas ’ s wife was able to comprehend the information and apply it to the changes she had seen in her husband.

Even though AD often lasts years, many families have limited knowledge of the disease and few understand that it is eventually fatal. Discussion with Thomas ’ s wife about resuscitation status resulted in a decision to not resuscitate. Thomas ’ s wife struggled with the discussion about hospice and the certainty of the disease progressing further. Thomas had a moderate stage dementia and by hospice guidelines was not eligible; however, he was declining and had a few recent hospitali-zations including an intensive care unit stay for pneumonia. Thomas ’ s wife declined to meet with hospice, but she had the knowledge that her husband ’ s condition was expected to decline and that hospice was an available resource in the future.

TAKE AWAY POINTS

• Take the time needed to gather information and prepare for the meeting.

• Patients and families want honest, evidence-based information, even when the prognosis is poor.

• Effective communication allows patients and their families to plan for the future.

• Effective communication is the key to developing a relationship with the patient or family. This level of communication requires mutual respect and strong listening skills that allow for gathering and eliciting information and the implementation of a treatment plan.

REFERENCES

[1] Buckman R. Breaking Bad News: A Guide for Health Care Professionals , 15th edition. Baltimore : Johns Hopkins University Press ; 1992 .

[2] Dias L , Chabner BA , Lynch TJ , Penson RT . Breaking bad news: A patient ’ s perspective . The Oncologist . 2003 ; 8 : 587 – 596 .



[3] Malloy P , Virani R , Kelly K . Beyond bad news: Communication skills of nurses in palliative care . Journal of Hospice & Palliative Nursing . 2010 ; 12 ( 3 ): 166 – 174 .

[4] Baile WF , Buckman R , Lenzi R , Glober G , Beale EA , Kudelka AP . SPIKES—A Six-step protocol for delivering bad news: Application to the patient with cancer . The Oncologist . 2000 ; 5 : 302 – 311 .


Case Studies in Palliative and End-of-Life Care, First Edition. Edited by Margaret L. Campbell.© 2012 John Wiley & Sons, Inc. Published 2012 by John Wiley & Sons, Inc.

12

HISTORY

Sundra was a 70-year-old Indian woman with a five-year history of dementia, diabetes, and debility. She had been admitted to the hospital three times in her last several months for infection. At her last hospital discharge, she indicated a preference for no future life- prolonging measures such as resuscitation, intubation/ventilation, or transfer to the intensive care unit. In fact, she wanted to avoid the hospital completely. She had talked with her family and they under-stood and respected her feelings.

Sundra was referred to hospice. Although she had lived in assisted living she moved to her daughter ’ s house. Sundra had pain with movement and cried when she was touched. She disliked being cleaned or bathed because it hurt too much. In fact, she didn ’ t like the finger sticks that were done to measure her glucose blood levels. After some discussion, these were discontinued because her blood sugar had been consistently low since she was not eating.

Her fatigue was profound. She had little energy to read, talk, or eat, the things she loved to do. She was, however, able to watch television. Her appetite had diminished, resulting in weakness and weight loss. She often coughed when she swallowed. She had no pruritis, shortness of breath, constipation, or discomfort from anything else.

Case 1.2 Diagnosis/Prognosis Uncomplicated Death at Home

Constance Dahlin


Case 1.2 Diagnosis/Prognosis Uncomplicated Death at Home 13

PHYSICAL EXAMINATION

Temperature: 38.2°C, Blood pressure: 125/70, Heart rate: 80, respiratory rate: 14

Head, eyes, ears, nose, throat: Normocephalic; pupils equal, round, reactive to light and accommodation; extraocular movements intact; dry oral mucosa; no lesions; no defects; no abnormalities

Chest: Bilateral clear sounds, no extraneous sounds, unlabored breathing Heart: S1 S2 no S3 or S4, no murmurs or rubs Abdomen: Positive bowel sounds, soft, non-tender, soft, Extremities: Thin, little muscle mass Neurologic: Alert and oriented to person and place; flat affect

DIAGNOSTICS

No diagnostic studies were conducted during this visit.

CLINICAL QUESTION

How do you recognize imminent death and communicate it to the family?

DISCUSSION

In 1997, the Institute of Medicine described a good death as “one that is free from avoidable distress and suffering for patients, families, caregivers.” 1 According the American Nurses Association Social Policy Statement, “Nursing helps patients experience a dignified death.” 2 The essence of palliative care nursing is promoting death at home when possible and when desired by the patient. Death, like birth, can be predictable in its process although unpredictable as to the exact time. Death at home can be a healing process for patients and families. Many patients have an instinct about their time of death. Although a patient ’ s instinct may not match their clinical condition, they may have more of a sense of when they will die.

The usual process in the last stage is very peaceful as the patient becomes more sleepy, then lethargic, obtunded, and comatose. 3 There are physical signs and symptoms of dying which can help offer some idea of time of death. Additionally, there are two conditions that may



influence the time of death. First, there may be an emotional component that includes some closure that patients need to attend to. This may be an important milestone such as a birthday, anniversary, holiday, birth, graduation, or the like. Second, there are physiological aspects to time of death; for example, once patients stop receiving fluids in any form, it is unlikely that they will live more than two weeks. 4

Signs and symptoms of dying have long been recognized, although in the literature signs and symptoms of dying now have been delin-eated as “syndrome of imminently dying.” However, some signs and symptoms depend on the stage of disease from which the individual is dying as well as co-morbid illnesses. Some end-stage disease processes have fewer painful sequelae than others, although dying is similar no matter what the diagnosis. Dying from end-stage renal disease or dementia may be relatively painless because the patient may simply drift into unconsciousness. Dying from heart failure or amyotrophic lateral sclerosis or pulmonary failure may cause more discomfort due to the presence of more symptoms. 3

There are a constellation of symptoms that signify that death is near. In terms of psychological and emotional aspects, patients may become more withdrawn. They may lack the energy to engage with people; they may not leave their room or their bed.

As a result, their social interactions diminish. They may also have visions of people close to them, some of whom may be deceased. They may also become restless or agitated. 3–5

The signs of this weakness may be seen in changes in vital signs such as lowered blood pressure and higher heart rates and changing respiration rates. In the last stages of the dying process, patients are asleep more than they are awake. They may become obtunded and unable to be aroused. Their breathing may change and there may be secretions or congestion. This is more disturbing to family members than the patient.

Treatment

The key element is to listen to the patient. Often, the patient may say he is either done fighting or doesn ’ t have the energy to do much more. The nurse can confirm with the patient whether this means he is ready to die. He may feel relief in having support that it is okay to die. Moreover, these statements signify it is time to discuss concerns with the patient about what he needs to do for end-of-life closure and offering support to the patient.

It may then be necessary for the nurse to coach families about the dying process. Often, family members recognize a patient ’ s decline and understand death is near more easily than the patient. This comes from the necessity of providing more personal care or that the patient is eating less and sleeping more. Sometimes the family may be so


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